FAQ

What is an invisible illness?

A person who has an invisible illness does not outwardly appear to be sick. I look pretty normal: I like fashion, I wear make-up, I go to the grocery store, I drive a car. However, I don't go out of my way to talk to people, and I avoid eye contact so they don't talk to me. Why? Because brain fog makes it hard for me to think. If I'm inside a store, fluorescent lights make me feel dizzy and disoriented, and it takes a lot of effort to carry on a conversation. I worry that I'll suddenly feel nauseous or dizzy while talking with someone and have to make a quick exit or explain myself. Neither tends to yield good results.

What does it mean to be chronically ill?

For me, it meant years of being misdiagnosed and over-medicated. It meant losing friends and feeling like I was going crazy. It meant dropping out of a PhD program. It also meant, and continues to mean, being misunderstood by nearly everyone, including my doctors. It means being ignored and dismissed. It means being too tired to stand up for myself, or having too much brain fog to think things through clearly. It means settling for less and not being in full control of life decisions. It means losing jobs. It means enduring a seemingly never-ending succession of medications (and accompanying side effects) to find out what will "work." It means having a disease become part of your identity. It means not being able to plan because you don't know how sick you will be from day to day. It means being handed a life sentence no one deserves.

It also means that I have had to become my own advocate. It means that, while I continue to take medication, I am also taking charge of my health in ways I can--through exercise and diet. I'm not seeking a cure, but I am trying to find the best method to optimize my health and my life.

What is POTS? What is NCS?

POTS stands for Postural Orthostatic Tachycardia Syndrome. It presents in a variety of ways, but one of the main ways that is true for every patient is that the heart rate skyrockets upon standing. I have a subtype of POTS called hypovolemic, which means that I have about 80% of the amount of blood that a normal person has. Symptoms that I personally deal with also include low blood pressure, fainting, daily dizziness, daily fatigue, severe brain fog, shortness of breath, sudden nausea, a seizure or two, palpitations, drenching night sweats, low body temperature... the list goes on. I cannot have caffeine, processed foods, or nitrites or nitrates. I have to eat a high-salt diet. Fluorescent lights wreak havoc on my autonomic nervous system and can mean a night of adrenaline surges and tremors.

NCS stands for neurocardiogenic syncope, which for me is coupled with an irregular heart beat. This means I have blood pooling issues, and I lose my vision every time I stand up. I also faint and often feel light-headed.

If you teach a child to hike

When you're ill, it can be difficult to figure out what kind of exercise will work for you--or just be tolerable for your body. A lot of people with the same illness as me feel that exercise is impossible. This is usually for one of two reasons:

1. Trying to do too much too soon. Even if you were a serious athlete in your "previous life," it's not a good idea to try to dive right back into whatever you were doing before. So you ran a marathon two years before diagnosis? Awesome. Now is not the time to try it again, especially if you haven't been training or conditioning your body and muscles. Many who try to dive head-first (sometimes literally) back into an activity they were previously able to handle find themselves feeling much, much worse afterwards. For POTS patients, this is the sort of thing that can trigger a flare that can last several days. Which can, understandably, make a person feel not-so-eager to try anything physical again for a while!
2. Not pushing yourself and letting yourself be uncomfortable. This doesn't mean pushing yourself when you are on the brink of fainting or seizing. However, the road to recovery, for me, involves putting myself in uncomfortable situations and feeling bad for a little while, but feeling better afterward. I know that my exercise routing over the past 2.5 years has strengthened my heart and improved my muscle tone. Having said that, I totally understand why people are reluctant to try to push their bodies. We already feel crappy enough, why do something we KNOW is going to prolong it or make it worse?

It's been difficult to figure out the "Goldilocks zone" of exercise. But now that I treat exercise like part of my job and make myself do it at least 4 days a week, I can feel a difference. When I don't exercise for 3-4 days, my body definitely feels it, and I can actually feel myself backsliding. If you have POTS, insufficient muscle conditioning can be an underlying factor. Also, for some reason, we tend to lose the muscle strength and tone we've gained fairly quickly. This makes exercise crucial.

When I was first diagnosed, I couldn't do the elliptical machine without passing out. Seriously. I bought myself a recumbent exercycle on Craigslist and worked up to using it 30-40 minutes a day at a moderate pace. I also began to take walks at a slow pace (with a buddy!) around my neighborhood on days when it wasn't too blasted hot. (I live in South Carolina, so during certain times of the year those days are rare.) After that, I began trying to do exercise DVDs and returned to the elliptical for short periods of time. After I started feeling stronger, I incorporated light free weights into my routine to work on muscle tone. Currently, I can jog 3.5 miles without stopping. But it's taken nearly 3 years to get here, and a lot of hard work. 

I believe that one of the key factors in making exercise work for you is finding some kind of exercise that you don't completely hate. For me, one of those things is hiking. There are so many benefits of hiking if you go about it safely (ahem! disclaimer!), including strengthening the heart, reducing stress by being in natural surroundings, and reaping some of the benefits of natural sunlight, such as vitamin D production, easing of skin conditions, strengthening the immune system, increasing oxygen in the blood, and lowering blood pressure. It also allows me to explore places I wouldn't have gone otherwise.

The air was just as fresh as you'd imagine.

 I am lucky to live in a state that has some great state parks and even some small mountains with well-marked trails. I decided to take advantage of this and have worked my way up from strolling a short paved trail to reaching the summit of the highest peak in the state--which I did this past weekend, with a good friend of mine.

My friend is 8 years old and had never been hiking before. She is an energetic and athletic kid, so I invited her to tackle the trail with me, warning that it wouldn't be easy. She was up for the adventure, and we spent most of the day on the trail. It was tough, and both of us got a little whiney and sore, but when we saw the view from the top, we both agreed that it was definitely worth the discomfort.

I am so grateful and proud of myself for working up to this point. I could never have done this two years ago. Even though I'm still considered "sick," I made it to the top of this mountain and taught a child about nature, animals, outdoor skills, and health along the way.

Even if you're having a difficult time now--whether it's due to a physical or mental illness, or an injury--I urge you to discover something active that helps you. I can't wait to go hiking again. In the meantime, I need to rest, because my hiking buddy wants to know when we can go again!

Do I know you?

If you've ever felt like giving up, you know me. If you have a chronic illness or are struggling to find a diagnosis, you know me. If you desperately want to be healthy but aren't sure where to begin, you know me. I'm you. I've been there.

I'm Jenn, and I'm an awkward girl in pursuit of a healthy life. This can be tricky at times since I have two chronic illnesses that throw a host of interesting symptoms at me every day.

By day, I work in the legal field and academia, but at home I'm constantly experimenting with new healthy recipes and exercising. I follow a modified Paleo diet, which means I occasionally eat grains and beans, and I like yogurt and the odd sprinkle of cheese on my eggs. I'm fairly type-A, but my journey to health is not about following any diet or exercise plan 100% perfect--it's about finding what works best for me and what makes me feel the best.

Because of my illnesses, I treat exercise as part of my job. I work it into my schedule at least 4 days a week, and usually 6 or 7 days a week, depending on how I feel.

Am I a medical professional? No. I can't give you medical advice, but I can tell you what it is like to live with these illnesses and strive to be as healthy as possible under my particular circumstances. And you know what? If I can do it, you can too. I truly believe that. A little over three years ago, I was all but bed-ridden. Today, and I mean this very afternoon, I jogged 3.5 miles. It's been a long road (pun fully intended), and I know it will continue to be tough at times, but it's worth it.

Join me for exercise, healthy recipes, and perspectives on life!